The World’s Worst Welcome Packet

The summer of 2017 was tumultuous at best. I started schlepping Jude to Occupational Therapy (OT) twice a week and filling out paperwork for Childfind. The “incident reports” for the preschool started to come more frequently and with that, the patience of the director was (understandably) waning. The sensory based issues were starting to become more and more noticeable as well. I would often pick him up from school to find him rolling in the dirt (not just normal little guy behavior). He starting gagging on everything we fed him. He would fight clothing with elastic and tags. We discovered his burning hatred for: hats, masks, goggles, sunscreen, toothbrushes, balloons, bells, medicine, puddle-jumpers, hot dogs, water slides, costumes, doors/cabinets being left open, singing, thunder, ice cream or popsicles, enclosed slides (open ones are acceptable), bikes, corn off the cob (on the cob is allowed), the fair, and haircuts (first haircut, grading on a curve, I give him an F-). It was so bad, the lady stopped half way through and said to me, “I don’t feel comfortable moving forward with how hard he’s screaming”…

Well, thank you for the half-cut hair, Janice!

We had our intake appointment for Childfind in late August. This turned out to be the first of four appointments, and overall took about 10 weeks. I point this out, because I was so desperate for answers and help, I was getting super frustrated by how long this process was taking. I wanted it FAST. I needed help and answers NOW. But, in hindsight, this is not a process that should be rushed. There is so much “mislabeling” and knee-jerk diagnoses done today, so learn to be thankful for the professionals and entities that slow down, take their time and really invest in your child, prior to handing them a life-altering diagnosis.

Jude was eventually “asked to withdraw” from the Montessori preschool. Around the time we got the findings from Childfind (important to note: Childfind cannot diagnosis a child, they can only make observations and recommendations) which will eventually go into your child’s IEP (individual education plan). Based on their findings they started Jude with an “itinerant teacher to exceptional children” who would work with him 2x a week on things like speech, sensory, etc. We weren’t seeing any progress after about 3 months.

November 21, 2017.

We pulled into the MUSC parking garage at 7:35a.m. We wandered the labyrinth of halls in the Rutledge Tower until we finally found developmental pediatrics. Jude was tired, but was acting content as he played with a mounted puzzle board on the wall.

“Jude Vazquez”.

We were ushered into the intake room. I glanced around the room—this is not going to end well. There was a blood pressure cuff sitting next to the chair for him, a scale with huge handles and the height chart had a large clear triangle that dropped to the tip of the child’s head.

And YEP. We went 0 for 3 on the intake items. No height, no weight, and although we didn’t get his official blood pressure—I guarantee it was about 300/300. He was screaming and kicking so hard the nurse just gave up and took us back to the room.

Not sure why an intake room completely serving patients with behavioral issues wouldn’t be more sensory-friendly, but I digress..

4 hours later, we retraced our steps to the car with what I’m going to call the “world’s worst welcome packet”–Welcome to the world of Autism. Jude was scored as moderate on the Autism Spectrum, but severe on Sensory Processing Disorder. Honestly, I wasn’t upset or shocked. I was ready not only for the diagnosis, but also I was ready for the fight (or so I thought). Autism was going to RUE THE DAY it ruined my family and my child. I was going to treat this like any other challenge in my life. I will work and attack until I get what I want—and I’m very good at getting what I want. Autism was no opponent for my skill set. I was so consumed with my battle plan and next steps, I hadn’t noticed that Joey (my husband) was processing this very differently–(WAY more on this later). We left with the diagnosis paperwork and scripts for speech therapy, occupational therapy and ABA therapy (so basically ALL the therapy).

We made it through Thanksgiving and Christmas that year. It was during this time that we shared the information with our families and close friends.

I want to pause here for a second. When it comes to telling grandparents of a child’s diagnosis—this can be extremely tricky. That child is P-E-R-F-E-C-T in their eyes and its “everyone else” who is wrong about them. Additionally, they come from a generation that knew virtually nothing of Autism, SPD, or any other behavioral diagnosis. Autism was of course around in the 1950-1980s, but it was lumped in with everything else that was labeled “retarded”. This is not offensive—it’s just how it was. I see countless comments in some of my autism groups from moms RAGING against their parents or in-laws or older relatives because they don’t know how to handle this, they use the wrong words, or downplay its severity. They comment things like, “that child is not autistic” because to them, that means retarded, as they were taught and this is not how they view their grandchild. This is a hard pill to swallow for baby boomers—be patience with them. It’s also highly likely they’re not around your child daily, so it is hard for them to see it.

*I would STRONGLY recommend you sit down and talk as a family about the diagnosis and encourage them to read the book “Ten Things Every Child with Autism Wishes You Knew”. It’s not a hard read and it’s extremely helpful for family and friends to understand your child and basic things that will help. We were very fortunate that we had minimal difficulty in this area, but that is not the case for lots of families.

And now, to you grandparents—this conversation brings no joy to the parents and it’s a hard one to have. Even if you feel the child is misdiagnosed or you don’t understand this world, it’s not your place to point that out and will only end badly for your family. Support the parent’s therapy plan, school choice, etc. I know this is hard to envision, but they love that child even more than you and want what’s best for him/her. They are with them daily, so their perspective is more accurate. They need you in their corner from DAY 1. Try to educate yourself on whatever diagnosis has just entered your family. Read recent books, articles, etc. Offer advice, only when asked.

Okay, back to the story…

Around this time, I had a very pivotal conversation with a new friend. She was actually the daughter of a customer of mine. She was also a Christian and had a son on the spectrum that was now in his teens. She told me that not only was their son in public school, it was highly unlikely they would ever be able to take him out of a public school.

Truth serum: Public school terrified me.

I never went to public school, and for the most part had heard nothing positive about South Carolina public schools. I could not imagine sending my child to a special needs class at a public school. I pictured a dark and dirty classroom with no windows, where kids were just gluing cotton balls on construction paper all day. I pictured temps, as the teachers, who didn’t care one bit and would yell at kids. And then there were all the “worst case scenario” stories you see on the news of secret footage and audio recordings of people abusing special needs students that unlocked feelings in me I didn’t even know I had. I watched a story on the news recently of a SN child from whom they were withholding food and laughing at him as he was crying and making him sit in pee all day. The mother was speaking in the interview with tears and all I could think of is PRISON—I’d be doing my interview from prison.

There was no way this would be a good step for us.

Reluctantly I set up an appointment to tour our elementary school PIC (preschool intervention class).

I WAS BEYOND SHOCKED!

It was the most amazing classroom with a bounty of different things for the students to work on, play with and utilize. The teachers were amazing as well (2 full time teachers and 3 therapists who rotated daily). The students received speech therapy and OT as a group twice a week, and nearly every activity on the schedule was designed to work on a different aspect of a special needs kid. I wanted this for Jude. I wanted him to start THAT DAY. There was only one open spot in that classroom and I was going to get it.
After calling a meeting with the preschool itinerant, and the principle, Jude was in—and started that following Monday.

I want to pause here to ensure you don’t miss this. As a Christian, I feel there is far too much “living in fear” of public education. For most of us who were raised in private/Christian school or home schooled, the idea of public school is scary for one real reason—it’s unknown. Normally, the only parts that make the news are the negatives and the phone videos that students capture of insane situations that occur. You read about drugs, guns, violence, and disrespect and think that’s the whole story. I will be the first to admit this was me. The first thing that absolutely blew me away with our public school was the teachers. How much they care, what they’re willing to do for their children, how committed they are to their progress—all of this was a shock me to.

I honestly last about 90 minutes in Jude’s PIC and I’m losing my mind, but their patience and commitment are astounding. If you know a special education teacher—let them know how special and important they are! Their job is extremely challenging, thankless and exhausting. They get the scraps of federal and state funding and often function with little parent support. (Hint: ask them if they need volunteers, they DO–ask if they need any supplies—lots of times it’s stuff you’d throw away, and they use everything!)

Once Jude was enrolled in PIC, his occupational therapy was forced to stop, because the private OT cannot go into the public school. This is the case with all public schools and all private therapists. I do understand why this is in place, but really wish this wasn’t the case as it would make it much easier on the parents, but I digress…again. (someday: Meredith for Senate!)

So, in the world of autism (and most exceptional children) there are “2 worlds” where you fight for intervention for them:

Educationally– this is your child’s IEP, the preschool intervention class, their school-based skills, academic intervention, etc. and
Medically– this is their doctors, therapy plan, diet changes, medications, etc.

I successfully survived my first IEP meeting, and was feeling very victorious on the educational side.

Now, it was time to turn my fight to the medical side—first stop: Aetna Insurance.